Transcript of Today’s Office Hours Webchat

Office Hours Webchat with Geri Dawson and Joe Horrigan Jan 5. Thanks to the more than 200 readers who joined us. As time allowed answering just a portion of more than 100 questions, we hope you’ll join us again next month—Feb. 2 (first Thursdays) at 3 pm Eastern.

Thursday January 5, 2012

2:56

Hi Everyone! We are just getting ready to begin!

2:56

3:00

Hello everyone, this is Dr. Dawson. Welcome to the webchat. We’re glad you are here. Dr. Joe Horrigan and I are here and ready for your questions.

3:00

3:00

Hello everyone – yes, this is Dr. Joe Horrigan and I am here, too.

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3:00

Advance question from LINDSAY: My 3 year old son has not been diagnosed as on the autistic spectrum at this time, however I have that gut mom feeling that he is on the spectrum. He went through the First Steps program from 18 months to his third birthday. He was evaluated by our school system and is now attending half day preschool five days a week. During that time he sees attends speech for two fifteen minute sessions. He especially needs help with his language both receptive and expressive. My question is what is my next step in finding a private place that deals specifically with autistic kids so that he can get a more intense therapy for his language delay? Also, is this kind of therapy covered by most insurance plans or are there other avenues to get it covered?

3:00

3:02

Hi Lindsay, This is Dr. Dawson. If you feel that your son might be on the spectrum, I encourage you to see a specialist – either a physician or psychologist – who specializes in autism and can provide a proper evaluation. If he does have autism, this will open the doors to intervention programs and services. Autism Speaks resource guide (http://www.autismspeaks.org/community/resources/index.php) can help you locate services. Speech-language therapy is usually covered by most insurance plans. Specialized autism treatment, such as applied behavior analysis, is sometimes covered depending on where you work and the state you live in. Follow your instincts and I wish you the best!

3:02

3:04

[Comment From Guest Guest : ]Me and my husband do not see eye to eye with our son is there anyway to find a common ground?

3:04 Guest

3:05

Hello, It is common for parents to disagree about what is best for their child. Find a time when the two of you can spend some quiet alone time together and allow time for each person to express their feelings and concerns. Really listen, reflecting back what you have heard. Then, see if there is a way of coming up with a solution that you both feel comfortable with. If you continue to have difficulty seeing eye to eye, meet with a professional and discuss the issues you disagree about with this person, who can help you be more objective and promote a healthy dialogue.

3:05

3:07

[Comment From Rachel Rachel : ]My son was diagnosed with PDD and Klinefelter’s in June. He had a feeding tube placed in March 2011 and is still not eating. He will be 3 in March. Any suggestions?

3:07 Rachel

3:09

Hi Kim, This is Dr. Dawson. It is not uncommon for young children with autism to recognize letters even before they start saying words. She can see the letters and use her visual skills, which may be stronger than her auditory skills. Playing games by pointing to and naming letters can be a way of stimulating her language development, so I encourage you to continue to interact with her by playing letter games.

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[Comment From Kim SmithKim Smith: ]I have a 2yr old daughter. Actually 27months old now. She doesn’t say any words at all, but she does recognize a few letters, A B C D E P T, not consistently but at times. I constantly work with her on letters. Because she has ADS/sensory issues, is she just repeating these because she’s recognizing them or could this truly be a preface to her ability to speak. what do you think??

3:09 Kim Smith

3:10

Rachel: This is Dr. Horrigan. It would be good to know if your son has had a formal GI workup completed, to look at potential biological or physical causes for his not eating, and to know what they found, especially if they did a biopsy. Also, a skilled dietician and/or speech therapist could be quite helpful, in terms of determining if there are any windows of opportunity in terms of your son’s preference for particular tastes or textures. There have been occasions, usually with older children, when we have to, out of medical necessity, use medicines in an off-label manner to augment appetite – examples would be cyproheptadine or risperidone or mirtazepine. Again, this is “off-label”, but sometimes we have to do it out of medical necessity.

3:10

3:12

[Comment From MicheleMichele: ]My Granddaughter is six years old, she can read at sixth grade reading level, she writes, she speaks a little bit of several languages self taught googler. yet, I rarely get a direct answer from her. Sometimes I do, sometimes I don’t. Suggestions on communication would be so helpful. One more thing, she has the most violent temper, what are the best means of disipline for kids with Autism.

3:12 Michele

3:14

Hi Michele, This is Dr. Dawson. Even after children with autism develop many skills, such as reading and even speaking in different languages, they can continue to have difficulty in the social use of language, especially with conversation skills or responding to questions that she might not be interested in. Before engaging her in a conversation, be sure to take a moment to get her attention and then state the question in a simple direct manner, even providing visual cues such as gestures. If she doesn’t respond, you can prompt her to respond by giving her choices of responses (“Do you want X or Y?”) or even providing the beginning part of her answer. She is fortunate to have such a caring grandmother.

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[Comment From GuestGuest: ]My daughter Madi is 10 almost 11 she has autism and is just starting puberty. I have never seen her so anxious like she has been these last few months. I have a dr.’s appointment to talk about medication for anxiety but, we are currently not on any, What types of med’s do they put such young children on?

3:16 Guest

3:18

Dear Madi’s mom: hormones such as estrogen and progesterone can definitely influence mood, as can the hormones from the brain that stimulate their production. Changes in these levels can trigger anxiety, including episodes that feel like ‘panic attacks’, sometimes associated with an emerging menstrual cycle, and this is not uncommon when there is a family history of bona fide anxiety disorders. In terms of medications, I suspect that you may end up talking with Madi’s physician about options such as an SSRI (e.g. fluoxetine, sertraline), starting with very low doses, or perhaps even a low dose of a benzodiazepine such as clonazepam, if there is a clear medical need because the anxiety is becoming disabling. I suspect that the degree of anxiety may settle down somewhat once Madi passes through menarche and commences regular periods, but that come take some time…

3:18

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[Comment From DesiDesi: ]I am a concerned sister my brother has been displaying very defiant attitude about going to school and doing his routinely schedule. He also has this tendency to lash out and talk to his hands naming them Oobi and Uma… He does very forcefully and it happens about 53 times an hour. His school brought this attention to us this summer 2011. His teachers have noticed he is doing this more and more which deters and delays the time to complete a task. Would you happen to know what this is?

3:20 Desi

3:21

Hi Desi, This is Dr. Dawson. The behaviors you are describing are common in children with autism. Your brother is having trouble knowing how to express his feelings in an appropriate manner. When he gets frustrated, he likely doesn’t know how to express his frustration using words, and therefore he lashes out. Repetitive behaviors are also common. Both the lashing out and repetitive behaviors can helped through behavioral interventions and sometimes with medicine. To find resources, take a look at Autism Speaks resources library.

[Comment From LaurenLauren: ]How often do you recommend having a child see a developmental pediatrician? My daughter saw one just over a year ago and is in an intensive school program, but I haven’t taken her back to the dev. ped. Should I take her every year or ever six months, etc??

3:22 Lauren

3:22

Lauren: This is Dr. Horrigan. Every six months is fine, in my opinion, if everything is going reasonably well, and there are no specific medical or psychiatric concerns that merit the use of medication. I would look at a more frequent pattern of visits to a developmental pediatrician if your daughter is not making the gains that you expect, or if you are wondering if medicine might be a useful part of her treatment plan.

3:22

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[Comment From GuestGuest: ]Hello, Doctors. I am a college student majoring in biology. Last summer, I managed a summer camp for adults with intellectual disabilities, and was inspired to specialize in autism when I (hopefully) attend medical school. I was wondering what inspired each of you to enter into this field of research?

3:23 Guest

3:23

Hello – This is Dr. Dawson. Like you, I was inspired to devote my career to autism at an early age. I babysat for twins with autism in high school. At that time, there was so little known about how to care for and help people with autism. We have made a lot of progress but we have a long ways to go and we need people like you to join the effort.

3:23

3:26

[Comment From GuestGuest: ]My 3 year old was just diagnosed on the spectrum 3 weeks ago. His IEP has been developed and his first day of special ed pre k was today! One of the things we will be working with is communication thru pictures. I’ve looked up info regarding PECS and similar. It is not in our budget to purchase PECS currently. Do you know of any other resources/options? Thanks.

3:26 Guest

3:26

Hello, This is Dr. Dawson. PECS and other visual communication systems can be very helpful in promoting language development in young children with ASD. Your school should provide you with an identical set of pictures that they are using so they can be used at home. Many times, these are handmade and can even involve photos taken by parents and teachers. You don’t have to necessarily use pictures made by a company. Here is a link about the use of visual supports:

[Comment From GuestGuest: ]How do you decipher how to treat co-morbidity with ASD and associated disorders such as GAD and ADD? My child has a combination of these and it is difficult to tease out cause and effect or primary vs. secondary – especially in social situations where the ASD is present and so is the ADD impulsivity. THANK YOU!!

3:28 Guest

3:30

Dear Guest: This is Dr. Horrigan. You are absoloutely right – it is tough to disentangle common co-morbid conditions, such as co-morbid anxiety, especially if the youngster’s degree of developmental disability is more substantial. This is one of the reasons why I like to spend a lot of time taking a good family history, especially to look at who in the family (mom, dad, brothers, sisters) might have common psychiatric conditions that are known to be heritable and can be readily treated – you mentioned two of them – anxiety disorders and ADHD are two good examples. Then we decide if we want to use medicine as part of the treatment package for the youngster with ASD – if we do, we typically start with much lower doses than the prescribing information typically indicates, and we pick a medicine that is keyed to the specific difficulties that the youngster is facing. An example would be something like clonidine for a youngster with ASD that is very hyperactive/impulsive.

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3:32

[Comment From lisalisa: ]I am an SLP and would like your insight on a client. He is 6 and nonverbal…uses some signs and pictures for communication very effectively. he has a history of aggressive behaviors that we think were related to gastro issues and underlying strep. those are taken care of now and aggression is only when he doesn’t get his way…very developmental behavior. Now, however, sometimes he gets this very confused look on his face and then starts to cry…a very pitiful cry. A hug makes it better for a while. he is also having a terrible time in public…restaurants, church….has huge meltdowns, bites, scratches…..

3:32 lisa

3:32

Hi Lisa, This is Dr. Dawson. Autism is often associated with medical issues, such as gastrointestinal problems, so it is great that you were aware that this boy was suffering and got the treatment he needed. You should keep a careful record of the times when he starts to cry to see if you can determine what is eliciting this. Perhaps it is something you can change. The important thing is to continue to help him learn to communicate his needs and feelings, so that he doesn’t have to resort to meltdowns and aggressive behavior. If you can anticipate when he is starting to get upset, you can prompt him to ask for a break or help by using a picture, word, or gesture, instead of having a meltdown.

3:32

3:33

[Comment From annann: ]My son is taking intuniv 2 mg it seems to be helping but I am being told by other parents that he should be in a combination of stimulant plus intuniv

3:33 ann

3:35

Ann: This is Dr. Horrigan. It is not a problem for your son to take Intuniv (guanfacine) by itself. If it is helpful for your son, and it is well-tolerated, by itself, that is fine. It can work well on its own for impulsivity/over-activity and to some degree for inattention/distractibility. The fact that it has been studied alongside stimulants is helpful additional information, but it does not confine how it is used by thoughtful clinicians.

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[Comment From MichelleMichelle: ]How do we handle discipline in our 4 year old.. limited verbal child? My husband, our child’s school and myself are all addressing it differently and it seems none of it is working!

3:36 Michelle

3:38

Hi Michelle, This is Dr. Dawson. Is your child participating in an intervention that uses applied behavior analysis (ABA)? If not, to find out more about ABA, you can check out this link on Autism Speaks’ website. See link below. The methods of ABA should be used to help discipline your child with autism. The method involves providing a routine and structured environment, breaking down the things you want your child to do into small easily understood steps, teaching each of these steps often with much repetition, and then reinforcing each behavior using those things that your child specifically finds reinforcing.

[Comment From AishaAisha: ]My son was diagnosed with ASD at 3yrs old the fall of 2010 and now this past fall 2011 he was diagnosed with ADHD. I want to know if this is common?

3:42 Aisha

3:42

Dear Aisha: This is not uncommon. ASD usually trumps the clinical picture, especially if the if the degree of disability is more severe, and the younger the child is. Also, DSM-IV discourages an ADHD diagnosis if autism is diagnosed as the primary condition. However, for many individuals with ASD, as the severity of their core ASD symptoms subside with maturity, it is not uncommon for the residual inattention/distractibility/hyperactivity/impulsivity to be the key disabling features that remain, and this become more evident as the school curriculum becomes more cognitively (and behaviorally) demanding.

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[Comment From LaceyLacey: ]Hi! I have been looking forward to this all week!! We started trying to get my almost Three year old daughter tested in September and I am very frustrated. We got a ref. from her Pedi. to early intervention. They called us after a few weeks and said that it would be better for us to go through the school board. We gave them all of our information and than weeks went by with no contact from the school board. I called them back and they said that they did not have our paper work. We did the inital testing on Dec 13th. The lady told us that she strongly suspects ASD and that she needs more testing done. They said to expect an appointment letter sometime in Feb. I did not want to wait that long with no information so I started trying to find a private dr. What a night mare. Call the insurance company and got a phone number. Called the dr and they said that we should wait until after the holidays so that she would be closer to 3 for testing. I called back Jan 2nd and was told that the dr was no longer accepting new pts. After explaining the situation they said that they would call me back after talking to the dr. The did not call me back despite me leaving 2 more messages over the next Two days. I got in touch with them again and they told me that she could start seeing a social worker that will be out until March. Should I wait that long? If so what do I do in the mean time? I feel like I dont know what to do with her. Like when she has a melt down I just kind of hold her.

3:43 Lacey

3:44

Hi Lacey, This is Dr. Dawson. What you are going through sounds so frustrating. I know you are eager to get started helping your child right away. I recommend that you check out Autism Speaks resource library which will show you the providers in your area. Keep calling until you find someone who will see you as soon as possible. Your local Birth-to-three center should see you right away. You can get started in speech-language therapy even before you have a formal diagnosis for your child. Also, there are many good books that explain things you can do at home to help your child. I recommend Overcoming Autism by Lynn Koegal. Check out Autism Speaks 100 day kit for more information about how to get started and find resources.

[Comment From CourtneyCourtney: ]My Son has been Biting the Inside of his Lip happens when he is upset, board, Or super excited! Now It is A big sore!! Witch is now Reacting with his eating!! What can I do to Stop or speed up the Healing?

3:47 Courtney

3:48

Courtney: This is Dr. Horrigan. You can also speak with a dentist, but it sounds like your son may have one or more apthous ulcers in his mouth from the accidental biting. Sometimes l-lysine can be helpful, but you have to really crush up the pills to make them easy to swallow if the ulcer(s) really hurt. Occasionally oral herpes can masquerade as, or look like, SIB mouth sores, in which case there are other medicines for that. But I think a dentist should take a look, to figure out what might be going on….and to make a proper diagnosis.

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3:50

[Comment From RobinRobin: ]My son is 11. DX with Asperger Syndrome. He hates school and seems to be very angry all the time. He is extremely bright but of course is lacking in social skills. Are there major behaviour changes related to puberty? is this anger normal? He is not angry all the time but he gets very frustrated easily and he screams at people!

3:50 Robin

3:50

Hi Robin, This is Dr. Dawson. The problems you are describing are not uncommon but it would be good to see if there is a way to help your son be happier, especially to enjoy school since he is so bright. Puberty brings many changes – both hormonal and social – can result in higher levels of emotional outbursts and anger. The first thing is to try to understand what it is about school that he hates. Is it the classroom structure, the academic material (is it interesting, boring, too challenging), his lack of friendships, or possibly bullying or teasing? Meet with his teachers to discuss your concern and see if you can make changes at school that will help him enjoy it more. Social skills training, which includes teaching a child had to manage their emotions and outbursts, can be very helpful. Check out Autism Speaks resource library to see if you can find a psychologist or behavioral specialist or social skills group in your area. You can find the link here:

Hi JM, This is Dr. Dawson. Your brother is fortunate to have such a caring brother! Check out Autism Speaks transition kit (above) – it describes in detail how to help an adolescent with ASD transition successfully from high school to college.

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3:53

[Comment From JMJM: ]My brother has Asperger’s and is getting ready to go to college this semester. How can my parents prepare him?

3:53 JM

3:55

[Comment From ShannonShannon: ]Hi, my son is 7 years old and has aspergers. He is also diagnosed with ADHD, sensory, and anxiety disorder. He has had so many changes in his life, we recently had to move in with my parents because my husband lost his job as a manager. My son is on focaline (15 mg AM), intuniv, and ritalin (5 mg at 4pm). He is having major issues at school and anxiety. He worries about the smallest thing and freezes answering the simplest questions (like 2 plus 2). He does see a therapist without any luck and the school feels like there is emotional barriers. But he is failing second grade regardless of us or the school helping. He use to be a straight A student and now he pulls C’s, D’s and F’s. Is there anyway (without medications) to lesson his anxiety or help him through this? We do play therapy but he seems to be getting worse to the point of effecting his gastrointestinal. He seems to pick fights and lie quite a bit at home. At school he runs to the nurse for every little thing or is late to class regardless of us dropping him off early. I believe it’s avoidance? Anything to subside his anxiety?

3:55 Shannon

3:56

[Comment From DonnaDonna: ]I am a bus aide for special needs children and I was wondering what is the best way to introduce change to autistic children

3:56 Donna

3:56

Hi Donna, This is Dr. Dawson. As you probably are aware, children with autism often resist change and can become upset by any change in routine. If you can anticipate a change ahead of time, it is most helpful. You can explain that things will be different (for example, the bus will be coming at a different time or take a different route) and illustrate this using pictures, if possible. Check out Autism Speaks visual support tool kit at this link:

Shannon: This is Dr. Horrigan. I think that the difficult changes that have occurred in your family’s life, mostly of which are not directly amenable to simple interventions, are influencing your son’s behavior. I am sure you are doing an excellent job at giving him the most emotional support that you can, given all that is happening. It would be good to know if there have been any recent changes in his school setting, as well, that could be contributing to how he is feeling and acting. In the meantime, to focus on the last part of your last question, when stress reaches ‘catastrophic’ levels, we sometimes use a small amount of risperidone or aripirazole, as examples, to dampen down catastrophic reactive outbursts. SSRIs are also an option – see my previous comments about this class of medicines in one of my earlier responses. I am also left wondering why your son is simultaneously taking Focalin and Ritalin; I would want to make sure that there is a good reason for that…sometimes, they make anxiety worse…

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[Comment From Suzanne B.Suzanne B.: ]My 8yo son has had chronic constipation since birth. Dx with ASD at age 3.5, with ADHD at 6. We’ve been using Miralax for years, but he sometimes gets backed up and requires an enema. We are trying regular toilet training (after breakfast and dinner) to encourage his system to regulate. My question is about diet. He is a “good eater” (when the amphetamines aren’t suppressing his appetite), and loves all kinds of food. So, I’ve been reluctant to try the GFCF route with him (add inflexibility to an otherwise relatively flexible Aspie). I wonder what you folks think — have you seen benefits to removing casein and gluten in this situation?

3:59 Suzanne B.

3:59

Hi Susan, This is Dr. Dawson. Psychologists and neuropsychologist both have training in behavioral health, but a neuropsychologist has special expertise in testing specific functions of the brain, such as attention, memory, and so on. The neuropsychologist can be especially helpful if you are concerned that your child has a learning disability.

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[Comment From LisaLisa: ]My almost 4 year son was recently diagnosed with ASD. We also have a daughter in first grade (6 years old) not ASD. What is a good age for us to explain her brother to her? Is too young to understand what autism is?

4:02 Lisa

4:03

Hi Lisa, This is Dr. Dawson. This would be a good time to explain your younger child’s autism to your daughter. She is old enough to understand and it will help her explain her brother’s unusual behaviors to her friends. Check out these links on Autism Speaks’ website that provide resources for siblings.

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[Comment From GuestGuest: ]What are your thoughts about the value of weighted blankets and weighted lap pillows? My 11 year old son was diagnosed with Aspergers in the 1st grade. His biggest challenge is the ADHD symptoms for which his physician put him on Ritalin. I, however, prefer non-drug methods when possible. He also suffers from sleep issues and is rarely rested… I made him a lap pillow from rice and an old pillow case and he says it “works” but sometimes he just tries to tell me something works because he thinks that’s what I want to hear… I don’t have time (or skill) to make a (safe) weighted blanket, but didn’t want to spend $ on one if it may not be helpful… any other suggestions?

4:03 Guest

4:04

Dear Guest: This is Dr. Horrigan. My experience with weighted blankets has been hit-or-miss. Sometimes they are helpful when there is a clear-cut degree of tactile defensives or if just-the-opposite (flat-out seeking of pressure/contact/hugs/body contact) is present, but you don’t know if it will help until you try it. I would try going up progressively on the weight (e.g. adding progressively more amounts of rice), and asking your son in a clear manner how it feels, if he likes it. If his answers are fuzzy or unconvincing, I wouldn’t persist. They are not for everyone, and I know the branded products can be expensive.

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4:05

From S. Wong
Hello, I have a question regarding my 6 year old son with Autism, who has many food allergies. In a routine urine dipstick and culture test at his Pediatrician’s office in May 2011, we found out through 2 separate urine tests that he repeatedly has a small amount of blood in his urine, but no infection or fever. Again in a follow up in December 2011, he showed a trace amount of blood, in addition to a small amount of protein, with no other symptoms. I suspect that this is a chronic problem with my son, who eats a lot, but has not much weight gain(less than one pound) in the last 6 months. The pediatrician suggested a follow up urine test in a month, but she does not show concern about the small amount of blood and protein.
I would like to know if the blood and protein in urine is considered normal, and if not, what other tests should be pursued to determine the cause? The only supplement that my son is getting is Culturelle and methyl B-12 shots/ once every 3 days. Thank you!

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4:06

SW: This is Dr. Horrigan. There are instances in which people can have a very small amount of blood in the urine and it is not associated with a disease or disorder, and the same would be true for a small amount of protein. What is seen when the urine is looked at under a microscope is important, as is the result of blood tests such as creatinine and BUN. This helps determine whether more substantial testing (e.g. renal ultrasound, or other type of imaging, or maybe even a biopsy) is needed. Also, I would want to know if your son is anemic (low red blood cell count), and whether that influenced your decision to implement methyl B-12. In terms of growth, it would be good to know if your son is staying on his height growth curve, and the degree to which he has shifted away from his normal weight curve – this CDC web site gives an example of the curves that I am talking about (http://www.cdc.gov/growthcharts/data/set1clinical/cj41l021.pdf ).

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Advance question from Shane: I currently work for an agency that offers an intervention program for infants and toddlers with autism. The program is family-focused in that the vast majority of intervention is aimed at teaching the parents how to intervene, rather than the more traditional aide-based model. In our view, the family is the centre of a child’s life. Teaching parents how to support their child independent of external supports is the greatest strength of our intervention program. However, this model is not without barriers. The most notable barrier to providing this intensive parent intervention is that many of the parents are only weeks from their child’s diagnosis and have yet to adjust to how their life will be different having a child with autism. Understandably, many of the families are simply not ready to participate in the intensive training; they are often not in the right ‘head space’ to participate in the intervention process and would rather Aides provide the support. What advice would you offer to families who find themselves in this moment in their lives? Further, what strategies would you offer to the staff of the organization in finding the balance between helping to support the family while maintaining the intensive philosophy of the parent-focused intervention?

4:07

4:08

Hi Shane. This is Dr. Dawson. It is important to meet parents where they are as you begin your work together. First, if a parent is showing signs of depression or anxiety or is having significant marital distress, referral to a specialist –either a physician or psychologist working in these areas – is recommended. Second, talk with the parent about the things that matter most to his or her. What does the parent find most challenging right now? Is it the inability to communicate? Is it a problem with eating? Is their child having frequent tantrums or aggressive behavior? Start by having the parent identify an area of concern and then help him or her learn strategies for dealing with that concern. If needed, start slow and establish very small goals so that the parent can quickly experience success. It could be as simple as finding appropriate toys or establishing a bedtime routine. Once a parent sees progress – however small – this usually helps alleviate stress and increases optimism and motivation.

4:08

4:09

[Comment From MichelleMichelle: ]Hi! I have a 9 year old son with autism. Lately his flapping has gotten really bad. He flaps near his hear so bad that his ears get red and he scratches his neck. I don’t see any other symptoms that are out of the ordinary, could this just be a phase or should I be concerned? Any suggestions?

4:09 Michelle

4:11

Dear Michelle: This is Dr. Horrigan. Yes, it could just be a phase, as you suggested, but I am wondering if your son is choosing this specific reptetive behavior for a reason. What is coming to mind is whether he has an ear problem; I am thinking about everything from lots of itchy ear wax to a foreign object (e.g. bead in the ear canal) to an ear infection. Has your son’s pediatrician been able to use an otoscope to look in his ears? Otherwise, it will be important to determine the context in which the flapping is occurring, to see if there is a behavioral manuever that can be implemented to redirect it before it gets too severe…

Thursday January 5, 2012 4:11

4:12

Hello. My name is Annette. I am a mother of eleven children. Seven boys… four girls, three of my boys are Autistic, ages 12, 11 & 9. My oldest daughter passed away in a car accident on Dec. 04-11. I explained to my children all at the same time about the death of their sister. I wonder if my three boys really understand what happened and what it means that their sister is now in heaven??? Please help me understand if there is a way to explain it to them that I might try. It’s kind of like the Groundhogs Day movie…. repeating itself over and over with my boys. Thank you

4:12

4:13

Hi Annette. This is Dr. Dawson. I am really sorry to hear about your daughter’s death. You have your hands full with so much responsibility. This must be a very difficult time for you. If your three boys are asking you about it again and again, then you do want to help explain what happened. I suggest you create a “social story” – in other words – a set of pictures that illustrate that their sister was in an accident and her body stopped working and she is now in heaven. Remember that kids with autism are very literal. They may have a hard time understanding that she won’t come back. Even though they are 12, 11, and 9, their ability to understand what happened will be more like a preschool age child. Here is a website that explains how to talk with a preschooler about death: http://www.babycenter.com/0_how-to-talk-to-your-preschooler-about-death_65688.bc?page=2#articlesection2 . Even though it is tiring to respond to their questions again and again, calmly reiterate what happened. Be sure to find the support you need. There are local support groups, as I am sure you know, for parents who have lost a child. Talking with other parents and professionals will help guide you and provide support.

2 4:13

4:14

Advance question from Sheetal: Do autistic babies/toddlers often start to babble much later than typical babies/toddlers and does their babbling differ in any way. Why do teachers and speech therapists often say that it’s a “positive sign” when an autistic baby/toddler produces consonant sounds in babbling even when they have not begun to speak any words yet?

4:14

4:15

Hi Sheetal. This is Dr. Dawson. Studies have shown that infants and toddlers with autism are delayed in babbling and, when they do babble, often they don’t make the same sounds as a typical baby. They make fewer consonant-vowel sounds, such as da-da and ba-ba. Babbling sounds are the building blocks for language, so it is a very positive sign when a toddler with autism begins making these sounds. Therapy can then build on these sounds to “shape” them to become simple words. For example, ba can eventually become ball. When a toddler with autism makes sounds, it is important to reinforce them by imitating them and playing sounds games

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Comment From Andrea:
Hi Doctors! I have a 22 month old daughter who has been getting aba therapy since she was 18mos.Research has shown that 40 hours a week of therapy gives the best results. So why is it that all of my daughter’s providers don’t agree? She is currently getting 6 hrs a week of aba which will be increased to 10 and we will be adding 1.5 of speech too.

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Hi Andrea, This is Dr. Dawson. Although early studies on ABA were based on 40 hours of therapy per week, more recent studies have used fewer hours with positive outcomes. For example, in a study that my colleagues published in 2012, toddlers received 20 hours of therapy from a trained provider and parents provided additional help at home by using the therapeutic techniques during their daily routines. The National Research Council, a body comprised on independent experts that inform policy, recommended that young children with autism receive 25 hours of structured intervention each week. This can be comprised of different therapies (ABA, speech-language, and so on). For more information, download Autism Speaks 100-day-kit (http://www.autismspeaks.org/family-services/tool-kits/100-day-kit).

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Advance question from LS: Not to identify myself and anger my family involved… may I just ask: Could it be possible that a parents life, pre-parenthood, be responsible for creating risk factors of autism in future children? Such as, doing a large amount of drugs in adolescents and early adulthood? Or just certain kinds of illegal drugs being more likely than others to effect their reproductive organs, in either or both future parents?

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LS: This is Dr. Horrigan. “Epigenetics” is an emerging field that examines the factors that influence whether or not a gene or genes are biologically active. This is different from the study of “genetics” which tends to focus on whether a particular gene or a version of a gene is present or absent. We now know that a wide range of factors such as substance abuse (e.g. cocaine) to stress (which can raise internal levels of hormones that can impact gene expression) are important epigenetic influences, in general, and they can play a material role in the expression of subsequent psychiatric disorders as well as medical illnesses. However, the study of relevant epigenetic factors in autism is at an early stage, and it is too soon to make definitive statements about the role of particular influences such as substance abuse in parents. I anticipate that several relevant epigenetic factors that can clearly influence autism expression will become evident within the next decade, as this is a focus of a lot of ongoing research.

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[Comment From clairclair: ]i have a 17 year old daughter who is severly autistic and over the last year has displayed rapid cycling behaviour how difficult is it to seperate mental health problems from the autism?

4:19 clair

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Dear Clair: This is Dr. Horrigan. I have to leave in a moment, but I think the best approach is to systematically gather data to look at your daughter’s pattern of cyclist. Then you would look for whether there are environmental/programmatic/contextual things that are occurring that sync up with the times when things are going bad. If not, you then think about psychiatric (or neurological) co-morbidities. For example, bipolar disorder certainly has a cyclical pattern, when it is actually present, and we look carefully at the specific behavioral changes that occur to see if they fall into the manic/hypomanic spectrum before rendering that diagnosis. To make that diagnosis, a family history of mood disorders is also critically important, as is the presence or absence of common accompanying medical difficulties such as migraine headache, atopic disorders (e.g. eczema) and asthma…as examples…. also it would be good to assure that features of a seizure disorder are not present (e.g. complex partial seizures)…this would require a formal neurological evaluation…as a final note, we oftentimes use anti-seizure medicines to treat bipolar disorder

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Advance question from María in Argentina:
Thank you for this opportunity. I live outside USA but I do think that the situation is similar to USA in these topics
1-Why the psychiatric paradigm is considered the most helpful when there are many unmet needs in families with children diagnosed with ASD of Concomitant medical problems (CMPDs) from immune dysfunction to abnormal answer to strep/herpes infections through GI problems?
2- Why the Early intervention programs do not include biological exploring of CMPs as a routine- not the usual ones, but considering the state of the art in the abnormalities of different subgroups of children with ASD? The combination biology-education has been the most helpful to us in practice- not the psychiatric-genetic.
3-Why are there not efforts to include protocols in practice that take into account the CMPs in children diagnosed with ASD?
4-Why the inflammation and oxidative stress are not routinely explored and treated if present in different subgroups of ASD children?
5-What efforts are being done to these problems to be addressed in practice ?

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Hi Maria, This is Dr. Dawson. What we now know is that autism is not solely a dysfunction of the brain. It affects the whole body. Autism is associated with a wide range of medical conditions, including as you point out, gastrointestinal problems, oxidative stress and metabolic problems, such as mitochondrial dysfunction, among others. In addition, it is important to screen for exposure to toxins, such as lead and others. Autism Speaks Autism Treatment Network (http://www.autismspeaks.org/science/resources-programs/autism-treatment-network) is devoted to understanding and treating these medical conditions. In addition, we are funding studies on immune dysfunction and infections, mitochondrial dysfunction, oxidative stress, exposure to toxins, and so on. We are investigating biomarkers that could identify children who have specific medical conditions. If these medical conditions are not addressed, we know that children cannot fully benefit from educational and behavioral interventions. Medical conditions can also contribute to problems with aggressions, self-injury, and attention difficulties. Treating the “whole child” is essential to any intervention program and requires a multidisciplinary team.

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Advance question from STACY: Can an aspergers diagnosis be made if there are minimal to no repetitive behaviors present and the child has some language impairments?….language was slightly delayed but really just more scripted with echolalia till therapy interventions. Language is much more meaningful now. I would like to discuss this with my son’s developmental ped but just wanted some more info first.

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Hi Stacy, This is Dr. Dawson. Children with Asperger syndrome do not show significant cognitive and language impairments, although slight delays in language are possible. To qualify for a diagnosis of Asperger syndrome, there needs to be evidence of a restricted range of interests/activities or repetitive behaviors, although this can be manifest in many different ways. I recommend that you talk with your doctor about getting a referral to a clinician who specializes in the diagnosis of Autism Spectrum Disorders. To find one in your area, visit Autism Speaks Resources page (http://www.autismspeaks.org/family-services/resource-guide).

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Thank you all SO much for joining us. Please join us next month, Feb. 2, and every first Thursday at 3 pm Eastern. Be well!